More than thirty years on from the first appearance in print of what we in North America now name HIV/AIDS (or SIDA in other parts of the globe), a recent report of the Institute of Medicine of the National Academies (IOM) noted:

Lesbian, gay, bisexual, and transgender (LGBT) individuals experience unique health disparities. . . .  Although a modest body of knowledge on LGBT health has been developed, these populations, stigmatized as sexual and gender minorities, have been the subject of relatively little health research. As a result, a number of questions arise: What is currently known about the health status of LGBT populations? Where do gaps in the research exist? What are the priorities for a research agenda to address these gaps? (2011: S-1)

If queer people might have cause today to distrust the healthcare establishment, we need to understand our history with health professionals. For example, how much more fragile was the relationship between us and health clinicians and researchers in the first decade and a half of the AIDS epidemic. Dissent from consensus health care and health research then was clearly a question of survival in the face of political and medical intransigence.

In the post-World War II United States, a social, cultural, and political consensus developed around health science and the figures of the medical researcher and physician. The development of new vaccines (the Salk and Sabin vaccines against polio in particular), the invention of an array of antibiotics, and the creation of contraceptive devices and pharmaceuticals, all served to endow enormous symbolic and cultural capital in the medical sciences and their practitioners. Beginning in the 1950s, cancer researchers began to develop treatments beyond surgery, and by 1971 U.S. President Richard M. Nixon declared a war on cancer that he announced would achieve a decisive victory by America’s bicentennial year, 1976. Culturally, the family physician occupied a place of special respect and authority in middle-class life, represented in sentimentalized images by Norman Rockwell, and the hospital physician like Dr. Kildare or Dr. Casey was depicted in popular culture as a heroic figure. American parents of the Baby Boom generation were guided in their child rearing practices by Dr. Benjamin Spock’s Baby and Child Care. Important strides were made in the treatment of cardio-vascular disease, and in 1967 the heart, that most metaphorical organ, was transplanted from one human to another for the first time.

However, several factors contributed to an eventual legitimation crisis (see Habermas, 1975) surrounding medical science and practice. The dream of technology encountered the realities of the law-of-unintended-consequences, including pharmaceutical side effects, like those of thalidomide-caused birth defects. Cancer was not cured. The counterculture of the 1960s, with its back-to-nature ethos, was suspicious of technology, including medical technology and pharmaceutical technology. Women and minorities also discovered that they had not always been well served by a dominantly white, male medical establishment. The dissemination of Holocaust documentary including exposure of the Nazi’s pernicious medical “experiments” (which entered widespread popular awareness with the publication of William L. Shirer’s [1960] The Rise and Fall of the Third Reich and the televising of the trial of Nazi war criminal Adolph Eichmann in 1961, the subject of Hannah Arendt’s five-part series of articles in The New Yorker in February and March of 1963, and her [1964] Eichmann in Jerusalem: A Report on the Banality of Evil) was eventually followed by revelations in the 1970s of the Tuskegee syphilis experiment in the United States (see Jones, 1981). Women like those of the Boston Women’s Health Book Collective (1976) acknowledged that they had “experienced similar feelings of frustration and anger toward specific doctors and the medical maze in general, and initially . . . wanted to do something about those doctors who were condescending, paternalistic, judgmental and non-informative” (11), resulting in the writing and publication of Our Bodies, Ourselves, a do-it-yourself manual for women’s health promotion and disease prevention (see Davis, 2007). Even beyond an erosion of confidence in some vaguely imagined “medical establishment,” personified in large pharmaceutical corporations and the American Medical Association, the patient-physician relationship itself by the 1980s had absorbed this crisis of legitimation. The title of Terry Mizrahi’s 1986 longitudinal study of the professional socialization of interns and residents aptly expresses this crisis: Getting Rid of Patients.

In the 1970s, gay men were alert to disparities in their treatment
by the medical establishment. “Finding a physician” was one of the topics in 1977’s encyclopedic The Joy of Gay Sex, which asserted baldly that, “Not only are many straight doctors ignorant of gay medicine, some are actively hostile to gay patients” (Silverstein & White, 1977: 93) and grounded its discussion in the notion that gay men have unique health problems requiring a gay physician, or at least one who has worked with many gay patients. Its authors advised against having one doctor for ordinary health problems and another for sexual health problems, recommending: “It’s best to have one doctor to keep track of all your health needs, and if you cannot come out to him you need another doctor” (94). This guide likewise suggested that gay men needed to be equipped to direct and inform ignorant doctors, if, for example, they found themselves ill while traveling in a foreign country. The authors concluded: “For too long the health problems of gays have been neglected by irresponsible physicians” (94).

Only a decade before the appearance of AIDS, gay activists had successfully engaged in a struggle to have homosexuality removed from the lists of mental disorders of the American Psychiatric Association and of the American Psychological Association (Bayer, 1981), but right-wing figures countered with discredited social science, like the writings of Paul Cameron, in their opposition to gay social equality (Herman 1997: 76-80), characterization sexual minority lives as intrinsically unhealthy. As gay men, especially those in urban settings with large gay enclaves, became aware of the AIDS epidemic, debates among them about appropriate responses ranged from fervent calls for monogamy or even sexual abstinence to vilification of physicians as “erotophobic,” in time coalescing into a set of “safe sex” or “safer sex” guidelines (see Epstein, 1996; Long, 2005: 63-105). Eventually, the most visibly HIV/AIDS-affected communities, namely sexual-minority populations, resisted mainstream medical research conventions, taking charge of their own health and survival. Understanding this history helps us to place our current issues in context.

 References

Arendt, Hannah. 1964. Eichmann in Jerusalem: A Report on the Banality of Evil. New York: Viking Press.

Bayer, Ronald. 1981. Homosexuality and American Psychiatry: The Politics of Diagnosis. New York: Basic Books.

Boston Women’s Health Book Collective. 1976. Our Bodies, Ourselves: A Book by and for Women. 2^nd ed. New York: Simon and Schuster.

Davis, Kathy. 2007. The Making of Our Bodies, Ourselves: How Feminism Travels across Borders.  Durham, NC: Duke University Press.

Epstein, Steven. 1996. Impure Science: AIDS, Activism, and the Politics of Knowledge. Berkeley: University of California Press.

Habermas, Jürgen. 1975. Legitimation Crisis. Thomas McCarthy, trans. Boston: Beacon Press.

Herman, Didi. 1997. The Antigay Agenda: Orthodox Vision and the Christian Right. Chicago: University of Chicago Press.

Institute of Medicine (IOM). 2011. The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding. Washington, DC: National Academies Press. http://www.iom.edu/Reports/2011/The-Health-of-Lesbian-Gay-Bisexual-and-Transgender-People.aspx. Accessed 11 August 2011.

Jones, James H. 1981. Bad Blood: The Tuskegee Syphilis Experiment. New York: Free Press.

Long, Thomas L. 2005. AIDS and American Apocalypticism: The Cultural Semiotics of an Epidemic. Albany, NY: State University of New York Press.

Mizrahi, Terry. 1986. Getting Rid of Patients: Contradictions in the Socialization of Physicians. New Brunswick, NJ: Rutgers University Press.

Shirer, William L. 1960. The Rise and Fall of the Third Reich. New York: Simon and Schuster.

Silverstein, Charles, and Edmund White. 1977. The Joy of Gay Sex:  An intimate guide for gay men to the pleasures of a gay lifestyle. New York: Crown.

(Note: This material is excerpted and revised from an article in the Journal of Medical Humanities.)